posted
I'm new to the board, and I'd like to share my story to see if others have had my symptoms. If you take the time to read this and respond, I am greatly appreciative. It's a long post, but I wanted to be as informative as possible.
I watched Under Our Skin last night and am wondering if Lyme might be what is wrong with me. I was tested with the Western Blot test and only had the 41K IGG strand positive, so I ruled it out a year ago.
I am a 41 year old male living in Texas. I am married with a four year old daughter. Four years ago, I was an avid mountain biker and spent most of my free time riding trails and swimming in creeks. I loved the outdoors.
I don't remember ever getting a tick bite during the few years I rode the trails, but I have been bitten my ticks in my youth and during my college years as I pulled them off my body on more than one occasion. I just can't recall exactly when. I also don't ever remember a rash or flu-like symptoms that I would have attributed to a tick bite. Nonetheless, I thought it was worth mentioning.
Today I can really only do yoga for exercise and have lost most of the muscle mass I once had.
My symptoms:
March 2012 - I had a severe onset of joint/hand/wrist pain. I had noticed my hands tingling and sensitive a couple of years before and even saw my GP about it. I had blood tests for uric acid levels, Vitamin D, RA factor, but they came back normal.
In March of 2012, the pain became really bad. My hands (all of my hand and not just joints) hurt. I couldn't turn door handles, pick up my 18 month old daughter or wash dishes without being in extreme pain. I panicked and thought I had RA.
I had MRI's done of my neck and back to see if I had a pinched nerve. I had an EMG done to rule out MS.
The pain began to migrate over the next few months to all parts of my body. My hips hurt, knees, and even experienced TMJ at one point.
During that time I had all the inflammation markers checked by a rheumatologist. Sed rate, RA factor, pretty much all the bloodwork done to rule out Lupas, RA, and other rheumatic disorders.
I'd also add that my hands would get very warm but they never swelled. I've never had swelling anywhere except my knees.
My anxiety with a young daughter went through the roof. I used to be a confident spontaneous person who loved life. Now I'm a shell of that person.
About 3 months after the severe pain started, I started having popping in my shoulders and wrists. The popping is the biggest issue I'm dealing with today a little 3 years later.
Early on during all the initial doctor visits, I also saw a naturopath who tested me for food intolerances. I found that I was suddenly intolerant to 29 different foods according to their Elisa test.
For 38 years I ate whatever I wanted and was the poster boy for a poor diet of fast food, sweets, and soft drinks.
I eventually eliminated all these foods which pretty much keeps me eating only chicken, turkey, sweet potatoes, green beans, coconut milk, almond butter, bananas, avocados, and honey. I can't drink dairy without having severe neuropathy in my arms as well as joint pain returning. I can't really eat anything out of my house and never eat out anymore.
I've been to the Mayo Clinic in Minnesota and have seen 3 other rheumatologists who have all pretty much performed the same tests and blood work only to tell me everything comes back normal.
I've seen endocrinologists, orthopedic surgeons, GI docs, chiropractors, and other naturopaths. I've had my hormones and thyroid checked twice. My hands are like ice most of the time when they are not hurting. I went from 160 pounds in 2012 to 130 pounds in about a year's time. I am currently about 132 lbs and cannot gain the weight back.
The GI doc told be I am not absorbing fat (through fecal fat tests) and took pancreatic enzymes for a while with no success of gaining the weight back.
I removed gluten from my diet months before I had an endoscopy and colonoscopy, so Celiac tests were inconclusive. I've been told I could be on the "Celiac spectrum."
I've also been told I could be on the "Fibromyalgia spectrum" and offered Cymbalta which I turned down b/c I really didn't have many Fibro symptoms other than just being in pain.
Other symptoms that are not as problematic were ringing in my ears, numbness in my toes, and muscle twitching. I've recorded twitching in my neck, calves, back, and forearms for doctors to see. It's been the only real evidence to show them other than my story.
I've also lost the ability to eat salads, beans, and other foods as they wreck my digestive system. I've been strictly gluten and dairy free (among many other foods) for over 2 years now.
Through diet, I have been able to alleviate the joint/nerve pain. The muscle twitching comes and goes. I've had pain in my tailbone, sternum, and testicles throughout different times which I refer to as inflammation, but have no clinical proof of that. I've learned to live with most of my ailments by the popping continues to progress.
My major concern is that I have popping all of my large joints in my body. What started in my shoulders and wrists eventually moved to my jaw, neck, and now it's happening in my back which is keeping me in constant pain. The popping in my hips hurt and I recently had MRI's done that showed slight tears in both labrums of my hips.
The anxiety that I suffered from when this all started has returned b/c my neck and back pop and hurt so much. I am thinking seriously of seeing a LLMD in my state, but it will require a good bit of travel in Texas.
So I wanted to share my symptoms and see if others who have been dx'd with Lyme have experienced similar problems. Of course I know I'm likely leaving things out, but I'm happy to answer any other questions.
Thanks again for taking the time to read, and I appreciate whatever feedback you can give me.
...............................................
Breaking up your post for easier reading for many here -
Look at pages 9-10. This is a list of the most common lyme symptoms. You will see your symptoms on here. Lyme can cause hundreds of symptoms.
Just know that the lyme tests by Quest and LabCorp are nearly useless, they miss so many cases of lyme disease.
So, doctors diagnose people with lyme based on symptoms.
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (page 7 of Burrascano)
Some states now have laws that on the lyme test results it must say "A negative lyme test does not mean that you do not have lyme disease." The state of Virginia has such a notice requirement, for example.
See these old posts regarding lyme patients having popping joints:
There are many more. I am just giving you a sample of them.
If you want to search LymeNet for old posts on any topic, use the "search" function near the top of the page.
I hope you decide to visit a lyme doctor to get an expert opinion. In the meantime, take a good magnesium supplement and see if it doesn't relieve the muscle twitching. Burrascano recommends Mag-Tab SR by Niche. Order it on-line and get it in about 2 days. It is wonderful.
The more you study the Burrascano Guidelines, the better off you will be. This way, when you visit a lyme doctor, you will understand more of what he is saying and doing, the tests he is ordering (or isn't ordering), the supplements necessary to help you overcome the deficiencies you have with lyme, etc.
The Guidelines will give you your education on this disease. It is an extremely complex disease generally made up of a number of diseases.
Just giving you a partial list of your symptoms that are shown on pages 9-10 of Burrascano:
Hearing: buzzing, ringing, decreased hearing unavoidable need to sit or lie
Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
Neck creaks and cracks, stiffness, neck pain
Nearly all lyme patients get what is known as "lyme anxiety." It is horrible!
Of course, no patient has ALL the symptoms. It all depends on what parts of the body the disease is attacking which symptoms a lyme patient will get.
Generally, if you have many different symptoms affecting a number of bodily systems and no doctor can figure out what is wrong with you, then you have lyme disease. There are very few diseases that can attack joints, muscles, nerves (causing tingling, numbness), ears, etc. Lyme is one of the few that can.
So, get to a lyme doc and get tested through a tick-borne disease specialty lab like Igenex. Then, you will likely have your diagnosis.
Good for you for finding us and asking for a doc here. If you are willing to travel to see a doctor quickly, there is a lyme doc in the D.C. area who can see you in a few days right now. Let me know if you want his name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Below is the info about my Western Blot and who performed the test:
TESTING PERFORMED AT SUNRISE MEDICAL LABORATORIES 250 MILLER PLACE HICKSVILLE, NEW YORK 11801
Unless Otherwise Indicated, All Testing Performed At: Clinical Pathology Laboratories, 9200 Wall St., Austin, TX 78754
I will look into the Magnesium and I have read the symptoms list. I have seen joint pain and swelling (don't really experience swelling even though my hands and wrists used to hurt very badly). They sure felt like they were swollen. I haven't experienced that in quite some time b/c of my diet.
But the popping is terrible. From the links you posted, it sounds like those people had popping that worsened after treatment due to the killing off of organisms? I have to find a way to reverse the popping in my back and neck. My shoulders and wrists pop constantly.
I am talking to my wife about setting up an appointment with the Lyme doctor closest to us. I'm assuming he would likely run multiple screening tests to come to a conclusion? I've spent last night and today trying to understand how LLMDs test and their accuracy.
Once again, everything with my health issues has to be complex and controversial. I remember seeing the GI doc at the Mayo where he told me "leaky gut" and "candida" were all a hoax and a way for naturopaths to make money off of people in pain. It's very frustrating that sick people can't get the help they need.
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Breaking up a paragraph for easier reading for many folks here -
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Could be Lyme and possibly fluoroquinolone toxicity. Have you ever taken levaquin or cipro? They are antibiotics that cause persistent, cascading pain problems even after you stop taking them.
I have dealt with both (Lyme and levaquin) and they can be both very painful.
I'd see if you can get a copy of all the drugs you've been on over the past 10 years (or more).
Treatment is different for Lyme or fluoroquinolone toxicity.
Here's a link for tests for doctors to run. It's doubtful they ran half the stuff on here:
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It sounds like lyme to me, and I've had almost all of those symptoms at some point.
Migrating pain, knee, hip and joint pain, TMJ, food allergies, ringing in the ears, neck, joints or back popping, these are all common with lyme. The anxiety is from another co infection that came with the tick (ticks carry co infections).
Under Our Skin is an excellent documentary but you should know that lyme does something different to everyone. No two cases are exactly alike, as we are all quite different. What you saw doesn't necessarily mean it's going to happen to you in that manner.
Don't waste your time with anymore mainstream docs (we call them ducks or quacks). They simply have no clue about lyme due to the poor guidelines. It doesn't matter if they are infections disease docs or neurologists, if they are not ILADS trained, they're clueless. 99.9% of them are NOT ILADS trained, so that will give you some idea.
As far as I know there are two types of docs in TX. One is a Burrascano type and the other is a Dr. K type. Both Burrascano and Dr. K type lyme docs are excellent, although I haven't met the ones in that state, but heard some good things here and there.
I initially went for a Burrascano doc (not in TX) and later a Dr. K type doc. The Burrascano doc helped me kill off a bunch of spirochetes and diagnosed many co infections. However, the Dr. K doc was able to unearth co infections that the Burrascano doc wasn't able to find. Dr. K type docs are able to do this with energetic testing.
IMO it's advanced medicine but some can find it difficult to wrap their heads around. That said, I think most people see a Burrascano type doc first then shift over to a Dr. K doc if they are not getting any better. Either way, the choice is yours to make. Best wishes to you!
P.S. Most people travel to see a good lyme doc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You said originally that you got swollen knees. That is the #1 place that swells on a lyme patient. That is why I listed that symptom.
Your lab is not a tick-borne disease specialty lab, so it is not specializing in finding lyme disease in patients.
People on LymeNet cannot read paragraphs of more than 3 lines due to how lyme affects their vision, so they will not be able to read your posts if you continue to post large paragraphs.
I got rid of lyme (and babesiosis and bartonella) over 10 years ago by going to a doctor who followed the Burrascano lyme treatment protocol, so I am one of the few who can read what you wrote.
The posts about joint popping don't say what you think they say. They are telling you that lyme causes joint popping. Period.
Did you notice my quote of Burrascano "loud joint crepitus" (page 26) meaning popping joints? That is why I referred you to that post, in part.
The treatment does NOT cause the joint popping.
What I am trying to get across to you is that TESTING is not the main way a lyme doctor diagnoses a person. So, don't keep searching for what the correct tests are.
See this Burrascano quote under "Diagnostic Hints::
"Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
What this quote is saying is that the lyme specialist makes the diagnosis based on tick exposure (which you have had), the fact that you have developed many symptoms typical of lyme while being healthy previously (which you have), results of blood tests, and a trial of lyme treatment, meaning antibiotics.
See that last sentence of the quote. It is VERY important how you react to the trial of lyme treatment. Even in the year 2015, this is how lyme disease is diagnosed--by symptoms and a trial of lyme treatment. Take it from Burrascano.
Read that entire page which talks about how lyme disease is diagnosed.
You need to slowly and carefully read what Burrscano says. You need to understand every word. You will have to look up many medical words. For example, "crepitus" and "clinical diagnosis."
Clinical diagnosis means that the medical professional makes the diagnosis based on his or her judgment. So, as you can see, no test will give you the diagnosis of lyme disease. I hope you can start to accept that.
The best way to find out if you have lyme disease is to visit a lyme specialist, meaning a doctor whose practice is totally or nearly totally lyme patients.
So, if you want to get rid of joint popping, the best thing you can do is see a lyme specialist and if he thinks you have lyme, take a trial course of lyme treatment and see what happens.
Unfortunately, lyme disease is caught up in a major medical controversy which is not likely to end soon. The majority of doctors say lyme is easily cured with 2 weeks of antibiotics. So, they will treat you as a hypochondriac or depressed. They will NOT consider that you have lyme diease as the cause of your problems. We have all gone through that.
So, few doctors are willing to help lyme patients. You have to be willing to travel to them. Find one who follows the Burrascano Guidelines and has gotten people cured of lyme disease.
Often, the waits are unbelievable. And, it is expensive to see a good lyme doctor.
Many doctors treat lyme disease, but very few have ever cured anybody. Lyme is difficult to cure. I have to emphasize that. So, the doc is the key. Find a doctor who knows how to cure lyme disease.
Also, it is VERY common for lyme patients to have numerous food intolerances. These come because your immune system becomes overactive due to the lyme and other diseases. Then, it starts attacking food particles as if they were germs, especially if they escape out of a "leaky gut" which is a true medical condition.
One lyme friend of mine was down to only 5 foods she could eat.
Also, anyone with serious fibromyalgia (not mild fibro) generally has lyme disease. That is what my lyme doctor discovered when he started testing all his fibro patients for lyme through Igenex.
He also had fibro and was controlling it through diet, etc. and found out that his fibro was lyme. So, we hear this every day.
I bring this up because you are being told that you could have fibromyalgia.
I hope you can see the evidence mounting toward a lyme diagnosis for you. So, it would be logical to see a lyme specialist in your case.
You have already visited numerous medical specialties, just like most of us here prior to getting our lyme diagnosis.
I was at the gastro's office and got many gastro tests that showed nothing. I visited the gyn and had numerous sonograms that showed nothing. I visited the neurologist, etc. It was an endocrinologist who finally thought to test me for lyme disease.
So, your history of a search for a diagnosis is what we have all gone through. My search took 10 years. 10 years before a doctor thought to test me for lyme. And, I went to Johns Hopkins and all of the best.
I suffered for 10 LONG years before a doctor finally figured out what I had.
So, you can check out lyme disease any time you want. Just know that the longer you have this disease, the more it will progress and the harder it is to cure. Read it in Burrascano.
Why not look into it now? What do you have to lose? It is money well spent when it is searching for a way to regain your health.
Posts: 9931 | From Maryland | Registered: Dec 2007
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As far as I know there are two types of docs in TX. One is a Burrascano type and the other is a Dr. K type. Both Burrascano and Dr. K type lyme docs are excellent, although I haven't met the ones in that state, but heard some good things here and there.
- I don't know of any Dr K types in Texas. Do you have info I need for our lists?
There really aren't any good LLMD's there that I am aware of.
posted
Re joint popping, do folks here find that antibiotic treatment or herbal treatment stops it at all?
Or is it a matter of other care addressing this? Like I get chiropractic care for my spine and joints, which offers temporary relief.
I have also heard discussion about taking supplements to strengthen and remineralize our tissues, like biosil with silica in it, supplements like Ultra Body Toddy with 72 minerals in it from the Utah seabeds, and of course taking magnesium.
What other treatments do people do here to stop the joint popping?
Posts: 13116 | From San Francisco | Registered: May 2006
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It sure sounds like it's lyme. I spent one year seeing Dr.'s in SanFrancisco. Probably saw at least a dozen. I was at both ALS clinics and thank God that was ruled out.
Finally my primary sent me to an Oncologist who did a Pet Scan to see if cancer was hiding out in my body. It wasn't but he said my symptoms mimicked his Best friends wife's symptoms.
He thought I might have a tick borne disease and did a simple blood test for lyme. I was positive by CDC and started treatment but by then it was neurolyme. I had body jerks, sciatica, muscle mass loss all over.
I was a healthy person and it's been 10 years and I'm still treating. I did one year on oral antibiotics and one year IV.. I just recently became very ill again in February and considered lyme but I had severe rectal pain for six weeks and thought it was something else.
I just had three Catscans, another Petscan and two MRI's all negative. That being said my Dr. is now treating me for lyme. Within two weeks on antibiotics all my symptoms are once again gone. The sacral pain, sciatica and rectal pain all disappeared.
This last bout has me convinced I will be taking antibiotics as needed the rest of my life. If I were you I would find a lyme literate Dr. There are many wonderful ones who can and will get you on the right path.
**edited for easier reading**
[ 06-19-2015, 10:22 PM: Message edited by: Lymetoo ]
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
Yes Yes Yes Yes Yes Yes to your whole story. You just described me. I got bit in Arlington, Texas. Texas is endemic for borelia being carried by ticks now.
You can pm me if you want. You need to get to a lyme literate MD asap.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
bump
Posts: 79 | From Austin | Registered: Jun 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
It sounds very very suspicious for Lyme.
As to try to understand how you would be diagnosed... the tests are not 100% and have a lot of false negatives. So testing would be part of it but ultimately it is a clinical diagnosis.
The Western Blot is a starting point NOT the Elisa. There are other tests too. Igenex is a lab that a lot of LLMDs use but sometimes a standard lab can suffice. Also very important to test and evaluate for co-infections.
For starters, ask for a full copy of your W. Blot, so you can read which bands were positive.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
YES Texas is endemic for Lyme. TXLDA has first RISK map of a kind through their survey and a graduate GIS student compiled this map. The TDH is light years behind this information.
Posts: 532 | From Texas | Registered: Oct 2004
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quote:Originally posted by TF: Regarding band 39. Dr. C says: "It is the most specific antibody for borreliosis of all."
Do you have a copy of your test results? Would like to see how many + or Ind or whatever you have on 39 and 41.
It is pointing to lyme, just like your symptoms. Hope you take that as good news.
I don't have a copy of my results. The lab guy who took my blood is the one who passed the results to me. I should be getting my Igenex results this morning.
I didn't realize there was any more to the results than just a positive band.
Posts: 79 | From Austin | Registered: Jun 2015
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